By On the occasion of our 20th anniversary
By Gustavo Arellano
By R. Scott Moxley
By Alfonso Delgado
By Courtney Hamilton
By Joel Beers
By Peter Maguire
By Charles Lam
Waiting for a white pictograph of a walking man to cue his journey over restless Imperial Highway, a man wearing earmuff headphones is dancing. Partially obscured by fleeting cars, his unabashed beatitude outshines the world of impatient commutes surrounding him.
Behind the wheel of a green minivan sits Charles Monson III. A crown of scars circles his shaved head. Monson spies this dancing man, and his face brightens as if hit by the morning's first sunlight. He pets his brown parvo-survivor pit bull Larry and laughs. "Is he in a wheelchair?"
The Orange resident beams, contentedly silent. A few seconds pass. "Man, that's what it's all about—self-determination. The sunshine on your face. The simple things."
The minivan grinds to a halt—the $70,000 conveyance is in need of a brake job. Monson is parked outside a multi-acre complex in Downey called Rancho Los Amigos National Rehabilitation Center. Inside, lying in one of the center's nearly 400 beds, a man patiently waits for Monson and dreams of reclaiming his independence. Monson, who considers himself to be a friend of the severely disabled and a foe of government bureaucracy, has promised to deliver it.
Monson cracks the windows, turns up the air conditioning, and then clumsily unlatches himself from a system of hooks. The minivan's side door slides itself open. A metal tongue unfurls and lowers to the sidewalk. Monson places his palms on the hand rims of his ultralight wheelchair and applies downward pressure with his arms, propelling himself across the drawbridge to the sidewalk.
Perched in the passenger seat of the idling minivan, Larry watches his master roll away and whimpers.
Outside the entryway of one of the many buildings on the Rancho Los Amigos compound sits a procession of crippled humanity. Some are young, some elderly. Some are waiting for a ride home, some just getting some sun.
Monson pushes himself through the open doorway and rolls through the wide, vacant hallways. Constructed in the 1880s as a poor farm for the sick and indigent of Los Angeles, Rancho Los Amigos' second incarnation was as a polio ward. An old picture on the wall shows a roomful of people encased in iron lungs. After the polio epidemic abated in the 1950s, Rancho was repurposed once again as a rehabilitation clinic for those with spinal-cord injuries and has been one of the top-rated hospitals in the nation for 30 years. In 1955, a doctor there, Vernon L. Nickel, invented the halo, a brace used in spinal-cord injuries that is screwed into the patient's skull.
Monson's wheels squeak at each turn against the waxed, mirror-like red floor. Bored-looking security guards lurk around every corner. Monson says the guards are necessary because of the inordinate number of gang members at Rancho who were paralyzed by gun violence.
Monson's on his way to visit a man he met only months ago, but he probably understands this man's personal struggle better than anyone.
* * *
Before meeting Monson, Robert Casey, 49, had spent the past three years trapped in bed in a nursing home. Sores on his body festered down to the bone. Although he initially went into the facility to heal a single pressure sore, one became many, deteriorated and split open.
Treating Casey—a quadriplegic just like Monson, with no use of his legs and limited use of his arms and hands—requires he be constantly adjusted; the sores are created by his own body weight pressing down on his skin. Casey should be repositioned every two hours. Instead, he says, caregivers at his former nursing home left him lying on his side for eight hours at a time.
For three years, Casey shared a room with two others, separated only by green plastic drapes, at Pacific Haven Health Center in Garden Grove. His bed was near the window. His neighbor to the right lay comatose, and the next neighbor down spoke only Vietnamese.
Monson insists Casey could have aided his own recovery, if only he had the right wheelchair.
Pressure sores are a forever-looming danger for those who have been paralyzed. Without dedicated prevention, they can develop in as little as a day.
Think of it like this, Monson says: When able-bodied people sit in place long enough, their butt begins to hurt. That's because their body weight is suffocating the oxygen from the skin and fat underneath. So they shift cheeks, stand up or contract their muscles. However, people who are paralyzed can't feel if they're getting sore and sometimes don't have the strength to readjust. Before developing his first sore, Casey lived a relatively independent life for 27 years with the help of part-time care providers and an HUD-subsidized apartment in Irvine. He prevented pressure sores thanks to a power wheelchair with a tilt-and-recline system that allowed him to adjust himself. Even with limited arm strength, he could go where he wanted to when he wanted to.
When his wheelchair broke down, Casey applied to CalOptima for a replacement. CalOptima is the Medi-Cal agency that has provided health care for county children, low-income families and disabled people since 1995. The agency's budget is more than $900 million per year, with more than 300,000 members in Orange County.
Casey's application was denied. Instead, CalOptima offered a manual wheelchair with a manual tilt-and-recline system, documents show.
Casey has permanently fisted hands and can barely lift his arms to keep himself upright, yet he was denied a power wheelchair because "medical necessity for a power wheelchair has not been established," according to a December 2006 CalOptima document obtained by the Weekly. CalOptima documents further explain that the agency's decision took into account Casey's residing in a nursing home, where he had 24-hour access to caregivers—the same caregivers who sometimes left him for eight hours without adjusting his posture.
Monson, whose request for his own ultralight wheelchair was initially rejected by the agency, says CalOptima reflexively and systematically denies member requests for specialized wheelchairs. But, Monson and others say, the lack of the correct equipment is tantamount to a life sentence.
The agency is both Monson's benefactor and his nemesis. He is a member of CalOptima. But after fighting the agency in court for his own wheelchair—and winning—he says, he realized the law favors him and the untold numbers of other county residents whom CalOptima denies special equipment.
In a modest one-story home on an almost invisible Orange cul-de-sac, Larry greets visitors by jumping up on them. Monson is attempting to train Larry to be a service animal. He still needs some work.
Monson awkwardly wraps his motorcycle-gloved right hand around a water bottle. He bends back his wrist, causing his fingers to contract and hold the bottle. He shows it to Larry; the dog whimpers and backs off. "If he does that again, just show him the bottle—he knows."
A framed 1998 Orange County Register article hangs near his kitchen. A large picture of Monson giddily smiling in midair during a skydiving expedition dominates the page. Pictures taped on Monson's office wall show smiling, waving children sitting in wheelchairs. Monson runs a charity called Wheels of Mercy that collects donated wheelchairs, refurbishes them and gives them to disabled people in poor countries. This year, he hopes to send 100 wheelchairs to homes in Mexico.
Throughout his life, Monson has broken nearly everything that breaks in the human body. He lives with the misery of constant pain and the awareness that he should be dead. Living on borrowed time pushes him to find meaning in his life, he says.
In 1979, he was a lanky 6-foot-2 16-year-old. He graduated high school early and was looking forward to a summer of surfing and meeting girls. On a hot day in June, he and a friend went swimming in the ocean near 56th Street in Newport Beach.
"We were supposed to meet some girls," he begins. "The girls were late, and it was hot, so we headed for the water. We ran across the sand and down the shore and out about probably hip-deep. I leapt forward and dove under a wave. The spot I leapt from was deeper than the spot I hit. The weight of my body and the force of the forward dive buckled my arms, and my head hit, in essence, a sandbar.
"I was instantly paralyzed, facedown in the water. I couldn't move anything but my mouth and my eyes."
A friend fished him out of the ocean. He was awake when he was rushed to Hoag Hospital.
"The very first thing they did there is put a device called 'tongs' on me. They call them tongs because they look remarkably like the ice tongs of the old days that they would use to carry big blocks of ice. It was basically a big pincer that went into my skull on either side that they then put a cord and weight to so that I had traction, so they could relieve the pressure on the spine from the break.
"Three days after that, they fit me with what they call a halo, which is a circular piece of metal that goes around the skull that has screws going in at four points [and connecting] to a chest brace," he says. "The halo was awful because they can't give you any anesthesia when they screw the screws in. They're like self-tapping screws. They put this sharp screw against your skin that they have sterilized, and they just screw it in until it's in the skull. You hear it snapping and popping."
Three days before Monson's trip to see Casey at Rancho Los Amigos, he's wheeling through French Park Care Center, a nursing home in Santa Ana, to talk to another client, Richard Takacs.
"This is one of the better nursing homes," he says. "You can tell by the smell."
"Can I help you?" asks a woman wearing pink scrubs. Her posture, demeanor and name badge signify that she is in charge here.
"Yes, I was just wondering if Richard Takacs is in his room."
"I don't know," she says. "Go knock on the door."
Takacs, 62, lies in bed, watching an Angels game at high volume. He mutes the television with the remote control.
Next to Takacs' bed sits a broken power wheelchair.
According to documents obtained by the Weekly, Takacs has recurring pressure sores on his buttocks and legs, which are continually cycling between open wounds and almost healing.
In November 2006, physical therapist Satomi Okamoto at HealthSouth in Tustin evaluated Takacs and recommended he receive a power wheelchair with a power tilt-and-recline system, according to documents. The therapist noted that as a quadriplegic, Takacs doesn't have the strength to manually operate a chair, and because of his pressure sores, he needs to reposition himself often.
"With the custom features described above," Okamoto wrote, "Richard will be able to safely relieve pressure as well as be properly supported for independence around his facility."
Currently, he cannot move without the assistance of caregivers.
Admittedly ornery, Takacs refused to be repositioned by caregivers at French Park 30 times in April, according to documents. For a man who spent the first 58 years of his life doing things for himself, he may never get used to a life of dependency.
In June 2003, Takacs, a truck driver, fell out of the passenger side of a semi-tractor trailer after the door unexpectedly popped open as the driver made a sharp left. He landed on his head. For the past three years, he has lived at French Park. His only regular visitors—his sister and her family—come once a month from Colorado to take him out.
"Mentally, it's just . . . you know, it's bad," Takacs says. "You feel hooked-up in here. It's like being in prison or jail."
Full-time caregivers can hoist the 220-pound man out of bed with the help of a mechanical lift and push him to the recreation room for lunch or some bingo. But with his own power chair, Takacs could get outside and feel the sunshine whenever he pleased, or get on a bus and go wherever.
"There's a museum down the street on Main Street over here," he says. "Oh, there's different places I'd like to go to. The park, or just go out to the shopping center down here and everything."
On Dec. 19, 2006, CalOptima denied Takacs' request, saying he didn't meet the criteria, "since he has a full-time caregiver."
Even with the therapist's recommendation, CalOptima only approved a manual wheelchair and required he go to a wheelchair outfitter 40 miles away in Inglewood, even though at least two authorized vendors are within 10 miles of French Park.
Monson says Takacs' case, which he helped appeal, will likely be denied by CalOptima again. His next step will be to have a hearing in front of a judge at the Orange County Department of Social Services in Santa Ana sometime in the next few months. He hopes the case will be his third successful appeal in front of a judge and the 10th time he's helped a patient get a previously denied wheelchair.
For a few years in the late 1990s, Monson worked as an independent wheelchair evaluator to CalOptima members for a company called Adaptive Technologies Group.
"I would evaluate what the person does, how often do they go out of the house and into the community, and then write a detailed report and submit it to the insurance company. They would either approve or deny—usually approve.
"Once the wheelchair was approved, we, in essence, were the watchdog over that vendor, making sure the order went into the company properly, that it was followed up, that as soon as it got in, it was taken out and the patient was fitted."
But as time went on, Monson says, his evaluations were challenged more and more often, mostly by administrators who were not particularly knowledgeable about disabilities and didn't know which modifications were necessary and which might just be padding the bill.
Whenever Monson's clients were denied, he says, he made sure they got what they needed.
"If it happened on one of our evals, I'd go into their office," he says. "I'd say, 'Listen, you can't deny this. This person needs this,' and I'd tell them why."
But in 1999, Monson's contract with CalOptima was canceled after a new hobby—one that made him feel free for the first time since he was paralyzed—almost turned deadly.
Monson began skydiving.
"There's an amazing transformation or breakthrough. You make the conscious decision to leave the airplane when all of your instincts say, 'Don't jump,'" he says. "Something changes in you forever, and it's a positive change. It's an empowering thing that says, 'Yeah, I can do this,' perhaps even more so for someone who has limited mobility like myself."
On Monson's third jump, he broke his hip. On his fifth, he broke both of his legs.
"When you have a spinal-cord injury and you haven't stood for a long time, they can't put a cast on your leg when you break it. They can't put pins in it. You're just the rolling wounded.
"The manifestation of pain below my level of injury was profuse sweating, so I would just sweat and be in horrible pain. That's the main reason I gave up. The break wasn't that big of a deal; it was the year it took out of my life to be put back together."
The worst part was yet to come. Monson's injured spinal cord blocked pain signals to his brain, overloading his nervous system and causing a condition called autonomic dysreflexia. It caused extremely painful headaches, which he dealt with by using prescription pain killers. One day, when in a fit of pain, he ran out of Vicodin and called the paramedics.
"It feels like—you know that old movie Scanners, where they look at you and your head would explode?" Monson asks. "That's what it feels like is going to happen."
On his way to the hospital, a blood vessel burst in his brain, and it was lights-out.
"I was bleeding so much inside my brain, the concern was that the pressure would just squeeze my brain against my skull and kill me," he says. "So they went in and did whatever brain surgeons do to cut a channel into my brain.
"When my family came to see me, the very first words out of the attending physician's mouth were, 'You're going to want to make preparations for his body.' Well, I didn't die. Three days later, they changed their prognosis for me. They said 'it's possible' I would survive, but if I do, the only predictable outcome was that I would be vegetative for the rest of my life.
"I awoke from my coma 11 days later."
After months of rehabilitation, Monson's contract with CalOptima was canceled. But the calls kept coming in. Physical therapists, doctors and wheelchair vendors asked for his help to get patients through CalOptima's road blocks. Even though Monson was no longer under contract, he was the only one they could turn to. He couldn't say no.
* * *
A CalOptima-contracted wheelchair vendor—a man who asked that the Weekly not give his name because he was not granted permission from his boss to comment for this story—says power-wheelchair denials are commonplace.
Since the agency was created to handle Orange County's Medi-Cal patients in 1995, he says, it has cycled between being receptive when granting power-wheelchair requests and reflexively denying applications.
He says that every few years, CalOptima seems to rediscover it can save money, then complaints from advocacy groups, doctors and patients increase, and the agency relaxes its restrictions again.
"When they find themselves in crunches when it comes to budgets, this seems to be one of the places where they go," he says. "But if this is an issue of them feeling they're spending too much money, in that case, you have to sit down and look at what you're spending, but you also have to make sure you're meeting your members' medical needs."
Power wheelchairs are not cheap, he says. A specialized model with the features Casey and Takacs need can be $15,000 to $20,000. The high price tags seem to encourage interpretations of the law that mandates who gets the wheelchairs. One line in the law that defines what CalOptima should provide recurs in both Casey's and Takacs' paperwork: "Durable medical equipment shall be limited to the lowest-cost item that meets the patient's medical needs."
CalOptima cites the law in both denials, documents show, putting the onus on caregivers.
The CalOptima-contracted wheelchair vendor says using the "lowest-cost" argument doesn't work because the law also specifies the equipment must meet the patients' needs. Expecting understaffed nursing homes to push around patients wherever they want to go and to constantly reposition them so they don't get pressure sores is ludicrous, he says.
"They have a right to look at these things and ask questions. That's doing their due diligence. But in the end, they need to meet the needs of their clients. Reasonable people can sit down and have discussions and come up with decisions that are not Draconian."
CalOptima spokesman Ben Singer agrees.
Singer says that denials for patients who are genuinely in need are an unfortunate byproduct of a system that attempts to provide medical services to more than 80,000 seniors and persons with disabilities in Orange County. "It's a tremendous responsibility," he says.
In these cases, someone sitting behind a desk looked at the paperwork, believed they made the correct conclusion under the law, and denied the power wheelchairs. After that, the responsibility shifts back to the patients.
The scope of the problem is unclear. On Aug. 7, CalOptima lawyers responded to a California Public Records Act request submitted by Monson, asking for the number of requests and denials for wheelchairs over the past nine years. They wrote back, "CalOptima does not have disclosable public records in its possession that are responsive to this request."
Singer—who says he has worked for CalOptima for only a few months and had not heard of this problem before—is acutely aware of the hardships caused by having a disability. His daughter has cerebral palsy and could someday find herself in the same situation as Casey and Takacs, he says. He offered to look into Casey's and Takacs' cases immediately to see if there was something he could do to expedite their requests. However, he admits that patients who don't have anyone to advocate for them are at an extreme disadvantage.
"(Advocating for yourself) becomes really challenging for people who are disabled," he says. "That's where you would hope a physical therapist or physician would intervene."
Singer says the unfortunate reality is, for some patients, they themselves are their only advocate.
"Every patient needs to understand: It's how you advocate and to whom. A lot of people don't like to deal with their health plan because it's one big bureaucracy. But sometimes you have to work that system."
In room 23 on the third floor at Rancho Los Amigos, Robert Casey is propped up at a 45-degree angle while watching TV. Monson rolls to his bedside and awkwardly shakes Casey's permanently fisted hand with his own gloved hand, which is unable to form a fist. Casey says he is feeling "wonderful."
Eight weeks after myocutaneous flap surgery—where the areas of skin, fat and muscle affected by pressure sores are removed and replaced with healthy tissue—Casey's doctors say he could be two weeks from sitting in a chair.
He lies in a special bed filled with silica-sand particles encased in ceramic, which are being moved by air currents underneath. The bed costs about $1,100 per day. He says it's "uncomfortable."
On April 20, after a hearing at which Monson appeared as Casey's advocate, administrative-law judge Barbara Schlueter from the Department of Social Services ordered CalOptima to rescind its denial of Casey's request for a power wheelchair.
Casey says the new chair should be waiting for him as soon as he's able to sit in it. It will cost more than $17,000.
Casey's speech is somewhat slurred and subdued; it is unclear whether it's caused by his condition or the constant morphine drip being delivered to his veins. "My hair's even growing back, on the top," he smiles wryly as he motions his eyes toward the half-inch-long patch of what looks like baby hair emerging on his head.
A nurse comes in with a paper cup filled with multicolored pills. "Do you want to take these one at a time?" she asks.
"Oh, I'll just take them all," he says. She pours them into his mouth and lifts to his lips a paper cup filled with water, some of which spills onto his hospital gown.
Casey says that although he believes the care he's gotten at Rancho Los Amigos is far better than at his former nursing home, he's glad he's almost out. "My time here is coming to an end, to where I can see a light at the end of the tunnel," he says. "I'm looking forward to going places. I haven't been outside in five months. We're talking about my first outing here, getting out to go and eat. Have lunch somewhere. That would be nice."
He figures he will probably end up back in the nursing home until his name is called up on Section 8 housing-assistance waiting lists. He says he doesn't care where they put him as long as he's in Orange County, so he can be near his mother. "I would be glad to go back to the way I was," he says. "I used to go all over. I didn't have any hesitation about anywhere I went. You know, it was fun, compared to now."
Before leaving Rancho Los Amigos, Monson stops to weigh himself. The facility is one of the only places he knows of with a scale that can accommodate wheelchairs. It reads 200 pounds, 25 of which are his ultralight chair.
Reflecting on his victory on Casey's behalf, Monson says he's glad to help, even though it's only one person at a time.
"Whatever standard you and I, the representatives at CalOptima, the guy at the drive-through who gives you your food, the judge who presides over these cases—whatever standard we accept today, we are absolutely guaranteed to inherit," he says. "Because we're all headed that way. We're living longer, you know. People debilitate when they hit their 70s. Most of us are likely to end up in a nursing home at some time or other. You are one car wreck away on your way back to work from being on the Medi-Cal roll like I am," he says. "This wheelchair I'm sitting in, they denied."
Monson's participation in this story inspired him to start a message board dedicated to people in Orange County who feel they are wrongly denied a wheelchair by CalOptima. The message board can be found at www.ocadvocate.net. Monson's charity Wheels of Mercy can be found at www.wheelsofmercy.org.